With two children diagnosed with a rare heart condition, the King Ferry community is coming together to throw a benefit to help with medical costs.

In January of 2014, Robert and Carrie Brown learned that both of their children, 13-year-old Hailey and 11-year-old Hayden, had Hypertrophic cardiomyopathy, a genetic disorder that causes the heart wall to thicken.

Since the diagnosis, the two have undergone surgeries and traveled frequently for doctor visits. An upcoming benefit planned for the family will help with medical and travel expenses, Carrie said.

Robert is a deputy with the Cayuga County Sheriff’s Office and his wife, Carrie, who is originally from Lansing, works at Ledyard Farms. They reside in King Ferry.

According to the Hypertrophic Cardiomyopathy Association, it’s a condition that affects 1 in 500 people.

To make things harder, Hailey and Hayden have a rare dual mutation of the gene, Brown said.

About once a month, the family makes the six-hour trip Johns Hopkins in Maryland, where the children are under the care of Dr. Anne Murphy.

In April, Hailey underwent an AICD implant and Hayden had surgery Aug. 10. More procedures are expected in the future, Carrie said.

“They’re braver than us,” Robert said of how Hailey and Hayden have taken the diagnosis and surgeries. They have both taken it differently. Hayden is reserved, but more open about the condition. He even gave a presentation in school about it.

Hailey, the artist of the family, Robert said, doesn’t like to talk about it as much. While it has been difficult to cope, the two have been a comfort to each other. “They’ve got each other. I think it’s good. With Hayden knowing his sister has it and vice versa. I think it’s a good coping mechanism,” he said.

“We take it day by day,” Robert said. Without knowing anyone with the condition, he said he does not know what the future is like.

One of the people organizing the benefit, Dan Utter, farm manager at Ledyard Farms, said there will be enough food for 1,000 including barbecued chicken and pork and hamburgers and hot dogs with all the fixings. There will also entertainment, with music all day, a bounce house and raffles. Utter said he thinks the event could raise up to $20,000.

“We’ve always had a very caring community, and they always step up and come to par,” Utter said. “We hope everyone comes out and supports the kids.”

Robert said the community and their family has been incredibly supportive. “Thank you for all your support and dedication. On behalf of Carrie and I, we can’t thank the community and everybody enough,” he said.

The benefit will take place from 2 to 8 p.m. Sept. 19 at Ledyard Farms in King Ferry.

Follow Kelsey O’Connor on Twitter @ijkoconnor.

Benefit

What: Benefit for Brown family.

When: 2 to 8 p.m. Sept. 19.

Where: Ledyard Farms in King Ferry.

Information: For more information about raffle tickets contact Barb Brown at (315) 497-0852 or (315) 237-1186 or Cristy Brown at (315) 246-1055 or Dan Utter at (315) 730-6134 or Linda Beckwith at (607) 227-2445.